Re: Looking for some insight

[Guest guest]

Oh my!!! That dr is not right. My WBC was at 89,000 when I was diagnosed and

they immediately did a BMB and started me on gleevec as soon as those

results were back. I got so upset reading your post I did not even finish

it.

Sharon T

_____

From: [mailto: ] On Behalf Of

islandanytime

Sent: Tuesday, August 04, 2009 4:52 PM

Subject: [ ] Looking for some insight

Hi, I'm new on this forum and have a few questions. A couple of years ago I

started getting so many illnesses: repeated bronchitis, every flu that was

out, and various other issues. Last year I started having severe bone pain

which sent me to my doctor. The bone pain has escalated and now I am on

morphine and other pain meds. Very tired just doing normal things around the

house and the bone pain is still there; especially along my spine and left

shoulder. My blood tests show that my wbc is 99000. My doctor says we have

to wait until the count reaches 100,000 before we can suspect CML. They sent

me to a physical therapists who could not help, x-rays showed nothing, and I

have to take more blood tests next week. The prior blood tests do not show

that anything else is wrong except that my EOS was 8% and my c reactive

protein is 34.7 - both are extremely high, especially the latter.

Is this normal? My " mystery illness " seems to be getting so much worse, I

have lost close to 10 pounds in the last couple of weeks even though I spend

most of my time sitting or lying down. Did anyone else go through various

other infections and symptoms before being diagnosed with CML; which I am

almost certain that is what is going on.

Once the wbc hits 100,000 what is the next step and what can I expect? I'm a

single parent and really just want to be prepared. Thanks so much for

reading my long post and I welcome any insight.

[Guest guest]

Please get another doctor right away. I was diagnosed at 20,000WBC which is

unusual but still.

Run dont walk to another doctor please!

There are several options on drugs and treatments. I am a single parent too, so

it is possible to continue on taking care of business. But you certainly need

to know whats up!

Best wishes and please keep us posted.

Rhonda

Sent from my Verizon Wireless BlackBerry

[ ] Looking for some insight

Hi, I'm new on this forum and have a few questions. A couple of years ago I

started getting so many illnesses: repeated bronchitis, every flu that was out,

and various other issues. Last year I started having severe bone pain which sent

me to my doctor. The bone pain has escalated and now I am on morphine and other

pain meds. Very tired just doing normal things around the house and the bone

pain is still there; especially along my spine and left shoulder. My blood tests

show that my wbc is 99000. My doctor says we have to wait until the count

reaches 100,000 before we can suspect CML. They sent me to a physical therapists

who could not help, x-rays showed nothing, and I have to take more blood tests

next week. The prior blood tests do not show that anything else is wrong except

that my EOS was 8% and my c reactive protein is 34.7 - both are extremely high,

especially the latter.

Is this normal? My " mystery illness " seems to be getting so much worse, I have

lost close to 10 pounds in the last couple of weeks even though I spend most of

my time sitting or lying down. Did anyone else go through various other

infections and symptoms before being diagnosed with CML; which I am almost

certain that is what is going on.

Once the wbc hits 100,000 what is the next step and what can I expect? I'm a

single parent and really just want to be prepared. Thanks so much for reading my

long post and I welcome any insight.

[Guest guest]

OMG - my WBC was only 23,000 and just rising and my Dr immediately suspected

CML based on the blood screen! I certainly had aches and pains in all my

joints, but was blaming it on arthritis, especially in the knees.

What has made you suspect CML - your Dr?

Regards,

From: [mailto: ] On Behalf Of

islandanytime

Sent: Wednesday, 5 August 2009 9:52 AM

Subject: [ ] Looking for some insight

Hi, I'm new on this forum and have a few questions. A couple of years ago I

started getting so many illnesses: repeated bronchitis, every flu that was

out, and various other issues. Last year I started having severe bone pain

which sent me to my doctor. The bone pain has escalated and now I am on

morphine and other pain meds. Very tired just doing normal things around the

house and the bone pain is still there; especially along my spine and left

shoulder. My blood tests show that my wbc is 99000. My doctor says we have

to wait until the count reaches 100,000 before we can suspect CML. They sent

me to a physical therapists who could not help, x-rays showed nothing, and I

have to take more blood tests next week. The prior blood tests do not show

that anything else is wrong except that my EOS was 8% and my c reactive

protein is 34.7 - both are extremely high, especially the latter.

Is this normal? My " mystery illness " seems to be getting so much worse, I

have lost close to 10 pounds in the last couple of weeks even though I spend

most of my time sitting or lying down. Did anyone else go through various

other infections and symptoms before being diagnosed with CML; which I am

almost certain that is what is going on.

Once the wbc hits 100,000 what is the next step and what can I expect? I'm a

single parent and really just want to be prepared. Thanks so much for

reading my long post and I welcome any insight.

[Guest guest]

I agree... 2nd opinion time. No matter what the cause, you can't just sit

around an wait for the wbc to get higher!

I actually thought I was pregnant in mid-March. In April I went to doc, told

him I was tired, stomach was hard, and nauseated. He told me I was

depressed, get on meds. I didn't, because I didn't feel depressed. He sent

me on my way, with no tests. In May, I started a new job in another state. I

had to walk at least 1 1/2 miles to get to my office and back to the car

every day. I was driving, walking, and away from my family. So, any more

symptoms... I ignored or blamed on something else. August 13th... I ended up

having a ruptured spleen. Emergency surgery.

Don't wait! Push for more action!

Tammy

_____

From: islandanytime [mailto:islandanytime@...]

Sent: Tuesday, August 04, 2009 7:52 PM

Subject: [ ] Looking for some insight

Hi, I'm new on this forum and have a few questions. A couple of years ago I

started getting so many illnesses: repeated bronchitis, every flu that was

out, and various other issues. Last year I started having severe bone pain

which sent me to my doctor. The bone pain has escalated and now I am on

morphine and other pain meds. Very tired just doing normal things around the

house and the bone pain is still there; especially along my spine and left

shoulder. My blood tests show that my wbc is 99000. My doctor says we have

to wait until the count reaches 100,000 before we can suspect CML. They sent

me to a physical therapists who could not help, x-rays showed nothing, and I

have to take more blood tests next week. The prior blood tests do not show

that anything else is wrong except that my EOS was 8% and my c reactive

protein is 34.7 - both are extremely high, especially the latter.

Is this normal? My " mystery illness " seems to be getting so much worse, I

have lost close to 10 pounds in the last couple of weeks even though I spend

most of my time sitting or lying down. Did anyone else go through various

other infections and symptoms before being diagnosed with CML; which I am

almost certain that is what is going on.

Once the wbc hits 100,000 what is the next step and what can I expect? I'm a

single parent and really just want to be prepared. Thanks so much for

reading my long post and I welcome any insight.

[Guest guest]

Outrageous! You deserve better. I'd sure like to see you find another doctor,

one with a better grasp of CML.

From: islandanytime@...

Date: Tue, 4 Aug 2009 23:52:12 +0000

Subject: [ ] Looking for some insight

Hi, I'm new on this forum and have a few questions. A couple

of years ago I started getting so many illnesses: repeated bronchitis, every flu

that was out, and various other issues. Last year I started having severe bone

pain which sent me to my doctor. The bone pain has escalated and now I am on

morphine and other pain meds. Very tired just doing normal things around the

house and the bone pain is still there; especially along my spine and left

shoulder. My blood tests show that my wbc is 99000. My doctor says we have to

wait until the count reaches 100,000 before we can suspect CML. They sent me to

a physical therapists who could not help, x-rays showed nothing, and I have to

take more blood tests next week. The prior blood tests do not show that anything

else is wrong except that my EOS was 8% and my c reactive protein is 34.7 - both

are extremely high, especially the latter.

Is this normal? My " mystery illness " seems to be getting so much worse, I have

lost close to 10 pounds in the last couple of weeks even though I spend most of

my time sitting or lying down. Did anyone else go through various other

infections and symptoms before being diagnosed with CML; which I am almost

certain that is what is going on.

Once the wbc hits 100,000 what is the next step and what can I expect? I'm a

single parent and really just want to be prepared. Thanks so much for reading my

long post and I welcome any insight.

_________________________________________________________________

Windows Live™: Keep your life in sync.

http://windowslive.com/explore?ocid=PID23384::T:WLMTAGL:ON:WL:en-US:NF_BR_sync:0\

82009

[Guest guest]

The more I think about this the madder I get! Imagine that doctor expecting you

to just sit around and let your white blood count soar ever higher. That is so,

so irresponsible.

btw what's your name?

in San Francisco

From: islandanytime@...

Date: Tue, 4 Aug 2009 23:52:12 +0000

Subject: [ ] Looking for some insight

Hi, I'm new on this forum and have a few questions. A couple

of years ago I started getting so many illnesses: repeated bronchitis, every flu

that was out, and various other issues. Last year I started having severe bone

pain which sent me to my doctor. The bone pain has escalated and now I am on

morphine and other pain meds. Very tired just doing normal things around the

house and the bone pain is still there; especially along my spine and left

shoulder. My blood tests show that my wbc is 99000. My doctor says we have to

wait until the count reaches 100,000 before we can suspect CML. They sent me to

a physical therapists who could not help, x-rays showed nothing, and I have to

take more blood tests next week. The prior blood tests do not show that anything

else is wrong except that my EOS was 8% and my c reactive protein is 34.7 - both

are extremely high, especially the latter.

Is this normal? My " mystery illness " seems to be getting so much worse, I have

lost close to 10 pounds in the last couple of weeks even though I spend most of

my time sitting or lying down. Did anyone else go through various other

infections and symptoms before being diagnosed with CML; which I am almost

certain that is what is going on.

Once the wbc hits 100,000 what is the next step and what can I expect? I'm a

single parent and really just want to be prepared. Thanks so much for reading my

long post and I welcome any insight.

_________________________________________________________________

Get your vacation photos on your phone!

http://windowsliveformobile.com/en-us/photos/default.aspx? & OCID=0809TL-HM

[Guest guest]

Dear Time,

I'm sorry, you doctor is full of beans. Any WBC over 30,000 is almost always

leukemia. I was diagnosed at 77,000.

Get to a NEW doctor immediately. With your pain and other symptoms this is an

EMERGENCY. My oncologist immediately sent me to the emergency room and admitted

me to the hospital. He said I could have dropped dead from heart failure at any

moment. I was given a blood transfusion and started on medication immediately!

Don't wait!

>

> Hi, I'm new on this forum and have a few questions. A couple of years ago I

started getting so many illnesses: repeated bronchitis, every flu that was out,

and various other issues. Last year I started having severe bone pain which sent

me to my doctor. The bone pain has escalated and now I am on morphine and other

pain meds. Very tired just doing normal things around the house and the bone

pain is still there; especially along my spine and left shoulder. My blood tests

show that my wbc is 99000. My doctor says we have to wait until the count

reaches 100,000 before we can suspect CML. They sent me to a physical therapists

who could not help, x-rays showed nothing, and I have to take more blood tests

next week. The prior blood tests do not show that anything else is wrong except

that my EOS was 8% and my c reactive protein is 34.7 - both are extremely high,

especially the latter.

>

> Is this normal? My " mystery illness " seems to be getting so much worse, I have

lost close to 10 pounds in the last couple of weeks even though I spend most of

my time sitting or lying down. Did anyone else go through various other

infections and symptoms before being diagnosed with CML; which I am almost

certain that is what is going on.

>

> Once the wbc hits 100,000 what is the next step and what can I expect? I'm a

single parent and really just want to be prepared. Thanks so much for reading my

long post and I welcome any insight.

>

[Guest guest]

That is so wrong! My WBC was 67,000 when an Allergist had my blood tested and I

was immediately sent to a cancer center. By the time I received my BMA I had

reached 97,000 and the BMA confirmed CML. Find a new Dr. fast. Wait and see

doesn't cut it in today's Medical circles unless you are waiting on a specific

treatment to take effect.

H.

dxd 2/2003

>

> Hi, I'm new on this forum and have a few questions. A couple of years ago I

started getting so many illnesses: repeated bronchitis, every flu that was out,

and various other issues. Last year I started having severe bone pain which sent

me to my doctor. The bone pain has escalated and now I am on morphine and other

pain meds. Very tired just doing normal things around the house and the bone

pain is still there; especially along my spine and left shoulder. My blood tests

show that my wbc is 99000. My doctor says we have to wait until the count

reaches 100,000 before we can suspect CML. They sent me to a physical therapists

who could not help, x-rays showed nothing, and I have to take more blood tests

next week. The prior blood tests do not show that anything else is wrong except

that my EOS was 8% and my c reactive protein is 34.7 - both are extremely high,

especially the latter.

>

> Is this normal? My " mystery illness " seems to be getting so much worse, I have

lost close to 10 pounds in the last couple of weeks even though I spend most of

my time sitting or lying down. Did anyone else go through various other

infections and symptoms before being diagnosed with CML; which I am almost

certain that is what is going on.

>

> Once the wbc hits 100,000 what is the next step and what can I expect? I'm a

single parent and really just want to be prepared. Thanks so much for reading my

long post and I welcome any insight.

>

[Guest guest]

Thanks to everyone for your input. I will insist on a bone marrow biopsy first

thing in the morning. My life was turned upside down last year when the chronic

pain began. I will keep you posted on my results as soon as I can. Hopefully I

can get in this week for a bmb.

Thank you all so much.

Dianne

> >

> > Hi, I'm new on this forum and have a few questions. A couple of years ago I

started getting so many illnesses: repeated bronchitis, every flu that was out,

and various other issues. Last year I started having severe bone pain which sent

me to my doctor. The bone pain has escalated and now I am on morphine and other

pain meds. Very tired just doing normal things around the house and the bone

pain is still there; especially along my spine and left shoulder. My blood tests

show that my wbc is 99000. My doctor says we have to wait until the count

reaches 100,000 before we can suspect CML. They sent me to a physical therapists

who could not help, x-rays showed nothing, and I have to take more blood tests

next week. The prior blood tests do not show that anything else is wrong except

that my EOS was 8% and my c reactive protein is 34.7 - both are extremely high,

especially the latter.

> >

> > Is this normal? My " mystery illness " seems to be getting so much worse, I

have lost close to 10 pounds in the last couple of weeks even though I spend

most of my time sitting or lying down. Did anyone else go through various other

infections and symptoms before being diagnosed with CML; which I am almost

certain that is what is going on.

> >

> > Once the wbc hits 100,000 what is the next step and what can I expect? I'm a

single parent and really just want to be prepared. Thanks so much for reading my

long post and I welcome any insight.

> >

>

[Guest guest]

I would run, NOT walk to another doctor.I was diagnosed with a 36,000

white blood count. There is no need to wait any longer. Please

either go to an oncologist, or an new PCP, NOW

shelley

On Aug 4, 2009, at 7:52 PM, islandanytime wrote:

> Hi, I'm new on this forum and have a few questions. A couple of

> years ago I started getting so many illnesses: repeated bronchitis,

> every flu that was out, and various other issues. Last year I

> started having severe bone pain which sent me to my doctor. The bone

> pain has escalated and now I am on morphine and other pain meds.

> Very tired just doing normal things around the house and the bone

> pain is still there; especially along my spine and left shoulder. My

> blood tests show that my wbc is 99000. My doctor says we have to

> wait until the count reaches 100,000 before we can suspect CML. They

> sent me to a physical therapists who could not help, x-rays showed

> nothing, and I have to take more blood tests next week. The prior

> blood tests do not show that anything else is wrong except that my

> EOS was 8% and my c reactive protein is 34.7 - both are extremely

> high, especially the latter.

>

> Is this normal? My " mystery illness " seems to be getting so much

> worse, I have lost close to 10 pounds in the last couple of weeks

> even though I spend most of my time sitting or lying down. Did

> anyone else go through various other infections and symptoms before

> being diagnosed with CML; which I am almost certain that is what is

> going on.

>

> Once the wbc hits 100,000 what is the next step and what can I

> expect? I'm a single parent and really just want to be prepared.

> Thanks so much for reading my long post and I welcome any insight.

>

>

>

[Guest guest]

Where do you live? You need to see a leukemia specialist. I started out with a

hemotologist/oncologist 10 years ago. It was only through the cml group

that I started learning about STI571 trials (Gleevec).They were doing trials

right down the road from me but he knew nothing about it. I found my own dr. and

got the drug by making my own appt with the leukemia specialist. You need to go

to a leukemia specialist.

From: islandanytime <islandanytime@...>

Subject: [ ] Re: Looking for some insight

Date: Tuesday, August 4, 2009, 9:45 PM

 

Thanks to everyone for your input. I will insist on a bone

marrow biopsy first thing in the morning. My life was turned upside down last

year when the chronic pain began. I will keep you posted on my results as soon

as I can. Hopefully I can get in this week for a bmb.

Thank you all so much.

Dianne

> >

> > Hi, I'm new on this forum and have a few questions. A couple of years ago I

started getting so many illnesses: repeated bronchitis, every flu that was out,

and various other issues. Last year I started having severe bone pain which sent

me to my doctor. The bone pain has escalated and now I am on morphine and other

pain meds. Very tired just doing normal things around the house and the bone

pain is still there; especially along my spine and left shoulder. My blood tests

show that my wbc is 99000. My doctor says we have to wait until the count

reaches 100,000 before we can suspect CML. They sent me to a physical therapists

who could not help, x-rays showed nothing, and I have to take more blood tests

next week. The prior blood tests do not show that anything else is wrong except

that my EOS was 8% and my c reactive protein is 34.7 - both are extremely high,

especially the latter.

> >

> > Is this normal? My " mystery illness " seems to be getting so much worse, I

have lost close to 10 pounds in the last couple of weeks even though I spend

most of my time sitting or lying down. Did anyone else go through various other

infections and symptoms before being diagnosed with CML; which I am almost

certain that is what is going on.

> >

> > Once the wbc hits 100,000 what is the next step and what can I expect? I'm a

single parent and really just want to be prepared. Thanks so much for reading my

long post and I welcome any insight.

> >

>

[Guest guest]

Dianne tell us where you live maybe someone can recommend a CML specialist in

your area.

Good Luck and learn all you can so you will be well equipped to discuss with

your Dr.

And take notes or a friend and or a tape recorder.

Anita

________________________________

From: islandanytime <islandanytime@...>

Sent: Tuesday, August 4, 2009 11:45:38 PM

Subject: [ ] Re: Looking for some insight

Thanks to everyone for your input. I will insist on a bone marrow biopsy first

thing in the morning. My life was turned upside down last year when the chronic

pain began. I will keep you posted on my results as soon as I can. Hopefully I

can get in this week for a bmb.

Thank you all so much.

Dianne

> >

> > Hi, I'm new on this forum and have a few questions. A couple of years ago I

started getting so many illnesses: repeated bronchitis, every flu that was out,

and various other issues. Last year I started having severe bone pain which sent

me to my doctor. The bone pain has escalated and now I am on morphine and other

pain meds. Very tired just doing normal things around the house and the bone

pain is still there; especially along my spine and left shoulder. My blood tests

show that my wbc is 99000. My doctor says we have to wait until the count

reaches 100,000 before we can suspect CML. They sent me to a physical therapists

who could not help, x-rays showed nothing, and I have to take more blood tests

next week. The prior blood tests do not show that anything else is wrong except

that my EOS was 8% and my c reactive protein is 34.7 - both are extremely high,

especially the latter.

> >

> > Is this normal? My " mystery illness " seems to be getting so much worse, I

have lost close to 10 pounds in the last couple of weeks even though I spend

most of my time sitting or lying down. Did anyone else go through various other

infections and symptoms before being diagnosed with CML; which I am almost

certain that is what is going on.

> >

> > Once the wbc hits 100,000 what is the next step and what can I expect? I'm a

single parent and really just want to be prepared. Thanks so much for reading my

long post and I welcome any insight.

> >

>

[Guest guest]

Hi: I hope all your answers helped you to get to another doctor. My WBC was

18,000, and the doctor did a immediate bone marrow biopsy on me within a week.

He said something is going on, even if its not CML. Unfortunately it was CML.

I agree with Anita. We are from all over the states. Please tell us where

you live, and one of us should be able to recommend a doctor that specializes in

CML etc.

Also, what type of doctor did you see?

[Guest guest]

If I were you I would print up all of our posts and show them to your

doctor!!!! He needs his eyes opened a little!!!!!!

_____

From: [mailto: ] On Behalf Of

dickie_64012

Sent: Tuesday, August 04, 2009 9:25 PM

Subject: [ ] Re: Looking for some insight

That is so wrong! My WBC was 67,000 when an Allergist had my blood tested

and I was immediately sent to a cancer center. By the time I received my BMA

I had reached 97,000 and the BMA confirmed CML. Find a new Dr. fast. Wait

and see doesn't cut it in today's Medical circles unless you are waiting on

a specific treatment to take effect.

H.

dxd 2/2003

>

> Hi, I'm new on this forum and have a few questions. A couple of years ago

I started getting so many illnesses: repeated bronchitis, every flu that was

out, and various other issues. Last year I started having severe bone pain

which sent me to my doctor. The bone pain has escalated and now I am on

morphine and other pain meds. Very tired just doing normal things around the

house and the bone pain is still there; especially along my spine and left

shoulder. My blood tests show that my wbc is 99000. My doctor says we have

to wait until the count reaches 100,000 before we can suspect CML. They sent

me to a physical therapists who could not help, x-rays showed nothing, and I

have to take more blood tests next week. The prior blood tests do not show

that anything else is wrong except that my EOS was 8% and my c reactive

protein is 34.7 - both are extremely high, especially the latter.

>

> Is this normal? My " mystery illness " seems to be getting so much worse, I

have lost close to 10 pounds in the last couple of weeks even though I spend

most of my time sitting or lying down. Did anyone else go through various

other infections and symptoms before being diagnosed with CML; which I am

almost certain that is what is going on.

>

> Once the wbc hits 100,000 what is the next step and what can I expect? I'm

a single parent and really just want to be prepared. Thanks so much for

reading my long post and I welcome any insight.

>

[Guest guest]

I am amazed at how low (in comparison to what mine were) most of your WBC

were. I went in and mine was 89,000 and I just went in for a routine exam.

My yearly physical. I had no symptoms at all!!!

89,000, 3 week on gleevec down to 55,00, 4 days later 13,000 7 days later

4.4---they dropped so so fast. But my Dr. knew immediately that I had

leukemia. Never said CML. I guess the BMB determined what kind of Leukemia.

So Please please change your doctor!!!! You need to get help NOW.

Sharon T

_____

From: [mailto: ] On Behalf Of

suzzienovember

Sent: Wednesday, August 05, 2009 7:10 AM

Subject: [ ] RE: Looking for some insight

Hi: I hope all your answers helped you to get to another doctor. My WBC was

18,000, and the doctor did a immediate bone marrow biopsy on me within a

week. He said something is going on, even if its not CML. Unfortunately it

was CML.

I agree with Anita. We are from all over the states. Please tell us where

you live, and one of us should be able to recommend a doctor that

specializes in CML etc.

Also, what type of doctor did you see?

[Guest guest]

Something doesn't make sense about this. I would think any doctor

would react immediately to a wbc that high. Are you sure that you

aren't adding a zero to your results? I could see a doctor waiting

for a wbc to go over 10,000 but not over 100,000. If you tell us

exactly what your test reads we can give you more information. There

should be a normal range listed and a big indicator somewhere on the

cbc that the the WBC is HIGH (like an H beside the number).

Why are you suspecting CML? There are other leukemias that have a wbc

that high. Is your doctor suspecting cml or are you? If you have cml

and a wbc of 100,000 the percentage of granulocytes would be high.

You likely wouldn't be even mentioning the EOS percentage.

We can help if you give us more information.

Dorothy

On Aug 4, 2009, at 7:52 PM, islandanytime wrote:

> Hi, I'm new on this forum and have a few questions. A couple of

> years ago I started getting so many illnesses: repeated bronchitis,

> every flu that was out, and various other issues. Last year I

> started having severe bone pain which sent me to my doctor. The bone

> pain has escalated and now I am on morphine and other pain meds.

> Very tired just doing normal things around the house and the bone

> pain is still there; especially along my spine and left shoulder. My

> blood tests show that my wbc is 99000. My doctor says we have to

> wait until the count reaches 100,000 before we can suspect CML. They

> sent me to a physical therapists who could not help, x-rays showed

> nothing, and I have to take more blood tests next week. The prior

> blood tests do not show that anything else is wrong except that my

> EOS was 8% and my c reactive protein is 34.7 - both are extremely

> high, especially the latter.

>

> Is this normal? My " mystery illness " seems to be getting so much

> worse, I have lost close to 10 pounds in the last couple of weeks

> even though I spend most of my time sitting or lying down. Did

> anyone else go through various other infections and symptoms before

> being diagnosed with CML; which I am almost certain that is what is

> going on.

>

> Once the wbc hits 100,000 what is the next step and what can I

> expect? I'm a single parent and really just want to be prepared.

> Thanks so much for reading my long post and I welcome any insight.

>

>

>

[Guest guest]

WAY TO GO.

I would recommend taking something for pain ahead of time -- vicodin, percocet,

something on that order. The doctor or technician should be also planning to

numb you with lidocaine.

No one should have to live with the chronic pain you describe, much less for a

year. I don't know what part of the country you live in, but since our members

live not only all over the country but all over the world, we can offer some

solid recommendations for doctors in the know in any number of areas.

Make sure and keep in touch and all the best to you.

From: islandanytime@...

Date: Wed, 5 Aug 2009 04:45:38 +0000

Subject: [ ] Re: Looking for some insight

Thanks to everyone for your input. I will insist on a bone

marrow biopsy first thing in the morning. My life was turned upside down last

year when the chronic pain began. I will keep you posted on my results as soon

as I can. Hopefully I can get in this week for a bmb.

Thank you all so much.

Dianne

> >

> > Hi, I'm new on this forum and have a few questions. A couple of years ago I

started getting so many illnesses: repeated bronchitis, every flu that was out,

and various other issues. Last year I started having severe bone pain which sent

me to my doctor. The bone pain has escalated and now I am on morphine and other

pain meds. Very tired just doing normal things around the house and the bone

pain is still there; especially along my spine and left shoulder. My blood tests

show that my wbc is 99000. My doctor says we have to wait until the count

reaches 100,000 before we can suspect CML. They sent me to a physical therapists

who could not help, x-rays showed nothing, and I have to take more blood tests

next week. The prior blood tests do not show that anything else is wrong except

that my EOS was 8% and my c reactive protein is 34.7 - both are extremely high,

especially the latter.

> >

> > Is this normal? My " mystery illness " seems to be getting so much worse, I

have lost close to 10 pounds in the last couple of weeks even though I spend

most of my time sitting or lying down. Did anyone else go through various other

infections and symptoms before being diagnosed with CML; which I am almost

certain that is what is going on.

> >

> > Once the wbc hits 100,000 what is the next step and what can I expect? I'm a

single parent and really just want to be prepared. Thanks so much for reading my

long post and I welcome any insight.

> >

>

_________________________________________________________________

Windows Live™: Keep your life in sync.

http://windowslive.com/explore?ocid=PID23384::T:WLMTAGL:ON:WL:en-US:NF_BR_sync:0\

82009

[Guest guest]

I had the very same situation but my WBC was 160,000.  My dr. said, " We are

deciding which blood cancer you have not if you have one.

Where do you live honey!!  We sure will hook you up with someone!!

Blessings and Good Luck,

Jo-Dee

From: Sharon Teichera <onthewtr@...>

Subject: RE: [ ] RE: Looking for some insight

Date: Wednesday, August 5, 2009, 3:20 PM

 

I am amazed at how low (in comparison to what mine were) most

of your WBC

were. I went in and mine was 89,000 and I just went in for a routine exam.

My yearly physical. I had no symptoms at all!!!

89,000, 3 week on gleevec down to 55,00, 4 days later 13,000 7 days later

4.4---they dropped so so fast. But my Dr. knew immediately that I had

leukemia. Never said CML. I guess the BMB determined what kind of Leukemia.

So Please please change your doctor!!!! You need to get help NOW.

Sharon T

_____

From: groups (DOT) com [mailto:groups (DOT) com] On Behalf Of

suzzienovember

Sent: Wednesday, August 05, 2009 7:10 AM

groups (DOT) com

Subject: [ ] RE: Looking for some insight

Hi: I hope all your answers helped you to get to another doctor. My WBC was

18,000, and the doctor did a immediate bone marrow biopsy on me within a

week. He said something is going on, even if its not CML. Unfortunately it

was CML.

I agree with Anita. We are from all over the states. Please tell us where

you live, and one of us should be able to recommend a doctor that

specializes in CML etc.

Also, what type of doctor did you see?

[Guest guest]

It sure is interesting with the responses to diagnosis and treatment.

From my dx by my GP and referral to my haem/t, from memory I had to wait 4

weeks then he scheduled me for the following week for a BMB which was done

under sedation. I don't know if your haem/t do Socal score, but mine was

literally 0 as I didn't have any spleen involvement. I'm sure if my white

cells were over 80,000 then I would have received immediate treatment. As it

was we had a 2 week holiday scheduled everything paid for and I went off on

that, then on the day we landed back, I had message from the haem/t

secretary to ring back for my first appointment. So I was dx July 25/07, saw

haem end of Aug and started Glivec end of September. I've got no idea what

my white cells were by then.

I didn't know any better (as all newbies don't) and the first thing I did

was get online and find out as much as I could!

Regards,

From: [mailto: ] On Behalf Of

suzzienovember

Sent: Thursday, 6 August 2009 12:10 AM

Subject: [ ] RE: Looking for some insight

Hi: I hope all your answers helped you to get to another doctor. My WBC was

18,000, and the doctor did a immediate bone marrow biopsy on me within a

week. He said something is going on, even if its not CML. Unfortunately it

was CML.

I agree with Anita. We are from all over the states. Please tell us where

you live, and one of us should be able to recommend a doctor that

specializes in CML etc.

Also, what type of doctor did you see?

[Guest guest]

I have a question, my name is and was Diagnosed in 2004, 3,000,000+

platelets, started Gleevec, then sprycel now waiting mutation tests.  I read

alot about the chronic pain associated with CML can anyone tell me how long you

can have CML before getting to that high of platelet elevation? 

From: richard_troxel <richard.troxel@...>

Subject: [ ] Re: Looking for some insight

Date: Tuesday, August 4, 2009, 9:21 PM

 

Dear Time,

I'm sorry, you doctor is full of beans. Any WBC over 30,000 is almost always

leukemia. I was diagnosed at 77,000.

Get to a NEW doctor immediately. With your pain and other symptoms this is an

EMERGENCY. My oncologist immediately sent me to the emergency room and admitted

me to the hospital. He said I could have dropped dead from heart failure at any

moment. I was given a blood transfusion and started on medication immediately!

Don't wait!

>

> Hi, I'm new on this forum and have a few questions. A couple of years ago I

started getting so many illnesses: repeated bronchitis, every flu that was out,

and various other issues. Last year I started having severe bone pain which sent

me to my doctor. The bone pain has escalated and now I am on morphine and other

pain meds. Very tired just doing normal things around the house and the bone

pain is still there; especially along my spine and left shoulder. My blood tests

show that my wbc is 99000. My doctor says we have to wait until the count

reaches 100,000 before we can suspect CML. They sent me to a physical therapists

who could not help, x-rays showed nothing, and I have to take more blood tests

next week. The prior blood tests do not show that anything else is wrong except

that my EOS was 8% and my c reactive protein is 34.7 - both are extremely high,

especially the latter.

>

> Is this normal? My " mystery illness " seems to be getting so much worse, I have

lost close to 10 pounds in the last couple of weeks even though I spend most of

my time sitting or lying down. Did anyone else go through various other

infections and symptoms before being diagnosed with CML; which I am almost

certain that is what is going on.

>

> Once the wbc hits 100,000 what is the next step and what can I expect? I'm a

single parent and really just want to be prepared. Thanks so much for reading my

long post and I welcome any insight.

>

[Guest guest]

Hi gang

Somehow my computer woes to getting into the site have now been righted

once again. Mystery.

--------------------------------------------------------------------------------

Looking for Insight

Please change your doctors to that of a CML specialist - CML is not like other

Leuks and is treated

and managed differently.

Most importantly on what stage or level your disease has progressed when

diagnosed would be

type of treatment being offered.

The year previous to being diagnosed I also had many bouts of colds and flus

which took many weeks to get

over. Bruising on legs and shin pain, walking slower and sleeping more. I also

had left shoulder pain that GP's

thought was a frozen shoulder and gave me cortisone injections - I was sick as a

dog from that injection an d

bed ridden - every heard of such a thing. Of course it wasn't frozen shoulder

it was referred pain from my speen

pushing up my lung from CML condition. Bruising which I thought was from working

with my horses was also

not from that - so all symptoms were explained away. My ankles started to gain

fluid at times as did my fingers

- just thought sodium levels too high and these would come and go plus hormones

etc. All explained away.

One unfortunately aspect unlike yourself I did not lose weight.

You need to get to the bottom of your symptoms - and you cannot do that by not

getting the right medical advise

You have to become your own advocate immediately

Suggestion - If you do not know a CML specialist perhaps go to your nearest

cancer hospital if you have no specialist nearby even if you have to travel

Sue (Aussie)

__________ Information from ESET NOD32 Antivirus, version of virus signature

database 4310 (20090805) __________

The message was checked by ESET NOD32 Antivirus.

http://www.eset.com

[Guest guest]

,

I was dx'd in 2007 was in the blast phase, I too had platelets in the millions

was fighting to stay conscious.I felt if I went to sleep I would not wake up.

My Dr's then said they have no way of knowing how long I had CML and asked when

I began losing strength, and in looking back It was about 2 years that I had

started losing stamina and severe colds that turned into full blown pneumonia

then a miss dx of pneumonia, walking pneumonia and pluracy went on for 6 mths

before found a Dr that would do a CBC.

My spleen and liver were ready to burst. And Today I am full remission taking 90

mg of Sprycel.

Thank You Lord

Anita

________________________________

From: mary mary <chatgal2000@...>

Sent: Wednesday, August 5, 2009 6:48:59 PM

Subject: Re: [ ] Re: Looking for some insight

I have a question, my name is and was Diagnosed in 2004, 3,000,000+

platelets, started Gleevec, then sprycel now waiting mutation tests. I read

alot about the chronic pain associated with CML can anyone tell me how long you

can have CML before getting to that high of platelet elevation?

From: richard_troxel <richard.troxel@ gmail.com>

Subject: [ ] Re: Looking for some insight

groups (DOT) com

Date: Tuesday, August 4, 2009, 9:21 PM

Dear Time,

I'm sorry, you doctor is full of beans. Any WBC over 30,000 is almost always

leukemia. I was diagnosed at 77,000.

Get to a NEW doctor immediately. With your pain and other symptoms this is an

EMERGENCY. My oncologist immediately sent me to the emergency room and admitted

me to the hospital. He said I could have dropped dead from heart failure at any

moment. I was given a blood transfusion and started on medication immediately!

Don't wait!

>

> Hi, I'm new on this forum and have a few questions. A couple of years ago I

started getting so many illnesses: repeated bronchitis, every flu that was out,

and various other issues. Last year I started having severe bone pain which sent

me to my doctor. The bone pain has escalated and now I am on morphine and other

pain meds. Very tired just doing normal things around the house and the bone

pain is still there; especially along my spine and left shoulder. My blood tests

show that my wbc is 99000. My doctor says we have to wait until the count

reaches 100,000 before we can suspect CML. They sent me to a physical therapists

who could not help, x-rays showed nothing, and I have to take more blood tests

next week. The prior blood tests do not show that anything else is wrong except

that my EOS was 8% and my c reactive protein is 34.7 - both are extremely high,

especially the latter.

>

> Is this normal? My " mystery illness " seems to be getting so much worse, I have

lost close to 10 pounds in the last couple of weeks even though I spend most of

my time sitting or lying down. Did anyone else go through various other

infections and symptoms before being diagnosed with CML; which I am almost

certain that is what is going on.

>

> Once the wbc hits 100,000 what is the next step and what can I expect? I'm a

single parent and really just want to be prepared. Thanks so much for reading my

long post and I welcome any insight.

>

[Guest guest]

,

I was dx'd in 2007 was in the blast phase, I too had platelets in the millions

was fighting to stay conscious.I felt if I went to sleep I would not wake up.

My Dr's then said they have no way of knowing how long I had CML and asked when

I began losing strength, and in looking back It was about 2 years that I had

started losing stamina and severe colds that turned into full blown pneumonia

then a miss dx of pneumonia, walking pneumonia and pluracy went on for 6 mths

before found a Dr that would do a CBC.

My spleen and liver were ready to burst. And Today I am full remission taking 90

mg of Sprycel.

Thank You Lord

Anita

________________________________

From: mary mary <chatgal2000@...>

Sent: Wednesday, August 5, 2009 6:48:59 PM

Subject: Re: [ ] Re: Looking for some insight

I have a question, my name is and was Diagnosed in 2004, 3,000,000+

platelets, started Gleevec, then sprycel now waiting mutation tests. I read

alot about the chronic pain associated with CML can anyone tell me how long you

can have CML before getting to that high of platelet elevation?

From: richard_troxel <richard.troxel@ gmail.com>

Subject: [ ] Re: Looking for some insight

groups (DOT) com

Date: Tuesday, August 4, 2009, 9:21 PM

Dear Time,

I'm sorry, you doctor is full of beans. Any WBC over 30,000 is almost always

leukemia. I was diagnosed at 77,000.

Get to a NEW doctor immediately. With your pain and other symptoms this is an

EMERGENCY. My oncologist immediately sent me to the emergency room and admitted

me to the hospital. He said I could have dropped dead from heart failure at any

moment. I was given a blood transfusion and started on medication immediately!

Don't wait!

>

> Hi, I'm new on this forum and have a few questions. A couple of years ago I

started getting so many illnesses: repeated bronchitis, every flu that was out,

and various other issues. Last year I started having severe bone pain which sent

me to my doctor. The bone pain has escalated and now I am on morphine and other

pain meds. Very tired just doing normal things around the house and the bone

pain is still there; especially along my spine and left shoulder. My blood tests

show that my wbc is 99000. My doctor says we have to wait until the count

reaches 100,000 before we can suspect CML. They sent me to a physical therapists

who could not help, x-rays showed nothing, and I have to take more blood tests

next week. The prior blood tests do not show that anything else is wrong except

that my EOS was 8% and my c reactive protein is 34.7 - both are extremely high,

especially the latter.

>

> Is this normal? My " mystery illness " seems to be getting so much worse, I have

lost close to 10 pounds in the last couple of weeks even though I spend most of

my time sitting or lying down. Did anyone else go through various other

infections and symptoms before being diagnosed with CML; which I am almost

certain that is what is going on.

>

> Once the wbc hits 100,000 what is the next step and what can I expect? I'm a

single parent and really just want to be prepared. Thanks so much for reading my

long post and I welcome any insight.

>

[Guest guest]

Anita, I printed out one of your previous emails in which you described your

journey. I put it on my bulletin board and I look at it every day. You are my

inspiration!

Gratefully,

From: awristen1@...

Date: Wed, 5 Aug 2009 18:15:05 -0700

Subject: Re: [ ] Re: Looking for some insight

,

I was dx'd in 2007 was in the blast phase, I too had platelets in the millions

was fighting to stay conscious.I felt if I went to sleep I would not wake up.

My Dr's then said they have no way of knowing how long I had CML and asked when

I began losing strength, and in looking back It was about 2 years that I had

started losing stamina and severe colds that turned into full blown pneumonia

then a miss dx of pneumonia, walking pneumonia and pluracy went on for 6 mths

before found a Dr that would do a CBC.

My spleen and liver were ready to burst. And Today I am full remission taking 90

mg of Sprycel.

Thank You Lord

Anita

________________________________

From: mary mary <chatgal2000@...>

Sent: Wednesday, August 5, 2009 6:48:59 PM

Subject: Re: [ ] Re: Looking for some insight

I have a question, my name is and was Diagnosed in 2004, 3,000,000+

platelets, started Gleevec, then sprycel now waiting mutation tests. I read

alot about the chronic pain associated with CML can anyone tell me how long you

can have CML before getting to that high of platelet elevation?

From: richard_troxel <richard.troxel@ gmail.com>

Subject: [ ] Re: Looking for some insight

groups (DOT) com

Date: Tuesday, August 4, 2009, 9:21 PM

Dear Time,

I'm sorry, you doctor is full of beans. Any WBC over 30,000 is almost always

leukemia. I was diagnosed at 77,000.

Get to a NEW doctor immediately. With your pain and other symptoms this is an

EMERGENCY. My oncologist immediately sent me to the emergency room and admitted

me to the hospital. He said I could have dropped dead from heart failure at any

moment. I was given a blood transfusion and started on medication immediately!

Don't wait!

>

> Hi, I'm new on this forum and have a few questions. A couple of years ago I

started getting so many illnesses: repeated bronchitis, every flu that was out,

and various other issues. Last year I started having severe bone pain which sent

me to my doctor. The bone pain has escalated and now I am on morphine and other

pain meds. Very tired just doing normal things around the house and the bone

pain is still there; especially along my spine and left shoulder. My blood tests

show that my wbc is 99000. My doctor says we have to wait until the count

reaches 100,000 before we can suspect CML. They sent me to a physical therapists

who could not help, x-rays showed nothing, and I have to take more blood tests

next week. The prior blood tests do not show that anything else is wrong except

that my EOS was 8% and my c reactive protein is 34.7 - both are extremely high,

especially the latter.

>

> Is this normal? My " mystery illness " seems to be getting so much worse, I have

lost close to 10 pounds in the last couple of weeks even though I spend most of

my time sitting or lying down. Did anyone else go through various other

infections and symptoms before being diagnosed with CML; which I am almost

certain that is what is going on.

>

> Once the wbc hits 100,000 what is the next step and what can I expect? I'm a

single parent and really just want to be prepared. Thanks so much for reading my

long post and I welcome any insight.

>

[Guest guest]

Aw,

Thank you so much I never ever thought of me as an inspiration. That is so sweet

of you to say

You just have no idea what your words mean to me.

Just don't ever give up

Anita

________________________________

From: Rosen Lum <rrosenlum@...>

Sent: Wednesday, August 5, 2009 8:26:19 PM

Subject: RE: [ ] Re: Looking for some insight

Anita, I printed out one of your previous emails in which you described your

journey. I put it on my bulletin board and I look at it every day. You are my

inspiration!

Gratefully,

groups (DOT) com

From: awristen1 (DOT) com

Date: Wed, 5 Aug 2009 18:15:05 -0700

Subject: Re: [ ] Re: Looking for some insight

,

I was dx'd in 2007 was in the blast phase, I too had platelets in the millions

was fighting to stay conscious.I felt if I went to sleep I would not wake up.

My Dr's then said they have no way of knowing how long I had CML and asked when

I began losing strength, and in looking back It was about 2 years that I had

started losing stamina and severe colds that turned into full blown pneumonia

then a miss dx of pneumonia, walking pneumonia and pluracy went on for 6 mths

before found a Dr that would do a CBC.

My spleen and liver were ready to burst. And Today I am full remission taking 90

mg of Sprycel.

Thank You Lord

Anita

____________ _________ _________ __

From: mary mary <chatgal2000>

groups (DOT) com

Sent: Wednesday, August 5, 2009 6:48:59 PM

Subject: Re: [ ] Re: Looking for some insight

I have a question, my name is and was Diagnosed in 2004, 3,000,000+

platelets, started Gleevec, then sprycel now waiting mutation tests. I read

alot about the chronic pain associated with CML can anyone tell me how long you

can have CML before getting to that high of platelet elevation?

From: richard_troxel <richard.troxel@ gmail.com>

Subject: [ ] Re: Looking for some insight

groups (DOT) com

Date: Tuesday, August 4, 2009, 9:21 PM

Dear Time,

I'm sorry, you doctor is full of beans. Any WBC over 30,000 is almost always

leukemia. I was diagnosed at 77,000.

Get to a NEW doctor immediately. With your pain and other symptoms this is an

EMERGENCY. My oncologist immediately sent me to the emergency room and admitted

me to the hospital. He said I could have dropped dead from heart failure at any

moment. I was given a blood transfusion and started on medication immediately!

Don't wait!

>

> Hi, I'm new on this forum and have a few questions. A couple of years ago I

started getting so many illnesses: repeated bronchitis, every flu that was out,

and various other issues. Last year I started having severe bone pain which sent

me to my doctor. The bone pain has escalated and now I am on morphine and other

pain meds. Very tired just doing normal things around the house and the bone

pain is still there; especially along my spine and left shoulder. My blood tests

show that my wbc is 99000. My doctor says we have to wait until the count

reaches 100,000 before we can suspect CML. They sent me to a physical therapists

who could not help, x-rays showed nothing, and I have to take more blood tests

next week. The prior blood tests do not show that anything else is wrong except

that my EOS was 8% and my c reactive protein is 34.7 - both are extremely high,

especially the latter.

>

> Is this normal? My " mystery illness " seems to be getting so much worse, I have

lost close to 10 pounds in the last couple of weeks even though I spend most of

my time sitting or lying down. Did anyone else go through various other

infections and symptoms before being diagnosed with CML; which I am almost

certain that is what is going on.

>

> Once the wbc hits 100,000 what is the next step and what can I expect? I'm a

single parent and really just want to be prepared. Thanks so much for reading my

long post and I welcome any insight.

>